Before I stepped into the realm of motherhood, I was already a professional worrier. Now, with two children, I’ve truly mastered the art. I can conjure up “what-if” scenarios like a seasoned expert. Yet, nothing could have prepared me for the news I received during my first pregnancy.
It was August 16, 2011, and I was 20 weeks along with my first baby. My journey to this point was filled with various attempts to conceive—everything from fertility teas sprinkled with “baby dust” (which was really just confetti), acupuncture, and some rather intimidating Chinese herbs to ovulation kits and Intrauterine Insemination.
As I anxiously awaited the 20-week ultrasound, my mind raced with concerns about the baby’s gender. Would I be able to bond with a boy, or would a girl leave my husband feeling let down? Little did I realize that this scan would reveal much more than just the sex of our baby.
During the ultrasound, my husband and I engaged in light conversation with the technician about the benefits of each gender. Everything seemed normal, but our baby persistently hid her face. We joked about her being shy. Then, we received the delightful news: we were having a girl! We shared the news with our families, reveling in our brief moment of joy before my obstetrician entered the room.
Her expression was serious as she delivered the news that our baby had a bilateral cleft lip and a possible cleft palate. We were handed a list of instructions and a contact number for the cleft team at the children’s hospital. It sounded straightforward—just a little surgery and a scar.
What followed was a whirlwind of appointments where we learned the full extent of her condition: she had both a bilateral cleft lip and a cleft palate, with the severity of the palate yet to be determined. Surgery would be required within her first three months to repair her lip and before she turned nine months for her palate. We met with an orthodontist, a dentist, a speech therapist, a nurse, an ENT specialist, and a plastic surgeon—all for what was referred to as a “little anomaly.”
Fortunately for me, the professionals on our team generously provided their contact information, allowing me to bombard them with questions about my daughter. My worries ranged from her infancy all the way through her teenage years. I had the curious advantage of contemplating all potential outcomes before she even arrived. My inquiries became well-known at the children’s hospital; I was the mom asking about braces and speech patterns well before birth.
Conversations with friends and family were often awkward. My social worker mom reassured me that everything would be fine, but I struggled to believe it. My writer brother conducted research that was off-limits to me, while my sister, an ER doctor, could only answer so many of my questions. My father, a rabbi, tried to comfort me with the notion that everything happens for a reason, but I wasn’t convinced. My mother-in-law constantly called in tears, grappling with the situation, and friends suggested that age may have played a role in our little girl’s condition.
Despite my frustrations with God, I found myself praying nightly, wrapping my growing belly in a pink receiving blanket and asking for guidance. I listed all the potential realities and hoped for manageable outcomes.
Then, a month early, my beautiful daughter, Lily, was born. Medical reasons cited pre-eclampsia, but I felt she was simply tired of my endless worrying. True to my fears, Lily arrived with a bilateral cleft lip and a complete cleft palate, missing much of the roof of her mouth. Yet, we were besotted with her charm. She spent some time in the NICU, learning to feed with a special bottle designed for her needs.
Once she was home, the real challenges began. Each appointment with the cleft team presented new, complex instructions. I often felt like a contestant on a reality show, anxiously awaiting the next task. Feeding her involved using a special bottle, and we had to secure a retainer with nose clamps—something that became a game of patience and ingenuity. Post-surgery, we were instructed to massage her healing lip daily, ensuring that we kept her hands away from her mouth.
Since her surgeries, Lily has undergone a lip and nose revision and had ear tubes inserted. She’s received a bridge to replace teeth lost around the cleft, and more procedures loom on her horizon, including a bone graft and possibly jaw surgery. Through it all, she’s emerged as a stunning child with a radiant smile, auburn curls, and an infectious spirit. She has a knack for singing and dancing and can recite multiple children’s books from memory. In fact, she’s featured in a video at the children’s hospital, showcasing her spirit and resilience.
Still, I can’t help but worry. I think about bullying, her self-image as she grows, and the dynamic with her younger sister. I fret over her future surgeries, her speech development, and any potential complications. The weight of these concerns feels heavier as a cleft mom, adding another layer to the universal worries every parent faces.
What I do know is that Lily is incredibly strong, and I need to learn to ease my own worries for her sake.
For those navigating a similar path, consider checking out home insemination kits or resources on IVF and fertility preservation to help you along your journey.
Summary
Being a cleft mom is a unique journey filled with worry, medical appointments, and learning to navigate challenges. From the moment of diagnosis, the journey involves deep emotional reflections, the joy of motherhood, and the strength to face uncertainties. Ultimately, every parent’s love shines through, and resilience becomes the guiding force.
Keyphrase: Being a Cleft Mom
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